Achalasia
Posted , 7 users are following.
Hi. I am a 46 yr old. I had a helleirs myotomy and funden nisopllication when i was 12 yrs old. Ever since the op i have had trouble getting most food to pass into my stomach without the aid of a drink. Things started to get worse in the last few years so i went to my G.P. He referred me to a specialist who gave me botox injections but this didn't help. Last year i went back and had a small ballooon dalitation (there are 3 sizes) which also didn't work. I went back again and had a medium balloon dalitation and that didn't work either. My consultant said the only treatment left is the large balloon dalitation but strongly advised against me having that as it has high risk of death or long term stay in intensive care (he told me the last time he did this procedure the patient ended up in intensive care for 3 months and almost died). He referred me for a second opinion but that consultant couldn't offer any other options either just told me to go back if i suffer significant weight loss. My original consultant has arranged for me to have an edoscopy once every 2yrs for the rest of my life to check for cancer.
My consultant was honest to inform me that my future didn't look very hopeful and i wondered if anyone else knew of someone who had had the same procedures of me that then later died and how long they lived for. I know it's diffferent for some people than others but i am just curious.
Ever since the op i had my lungs get sore if i run very short distances and feel cold but none of the doctors have an explanation for this.
Does anyone know about these symptoms and why i have them?
Thanks.
1 like, 26 replies
donna15310 k84461
Posted
Hi there. I had the Heller Myotomy & a Fundoplication, and three months later, a balloon dilation. Anything, foodwise, that goes into my mouth, has to be washed down with copious amounts of water. I have type 1, Achalasia, which means my esophagus is paralyzed. Finished.. no movement, hence the need for liquids everytime I eat. I was told that some people who have the Fundoplication [and there are different kinds of these], have the diaphram involved, so you might want to explore if your diaphram was involved.
k84461 donna15310
Posted
donna15310 k84461
Posted
Thank you. Ask your surgeon/specialist/GP what 'type' Achalasia you have. There is a patient's guidebook, that can be accessed online. If you don't have this, perhaps 'Alan,' from OPA, can direct you to it. There is some really good information in there about Achalasia, and the 'types.'
k84461 donna15310
Posted
k84461 donna15310
Posted
Hi Donna. I kept forgetting to contact my consultant to find out what "type" i have but finally have the answer now.
Apparently, i don't have type 1, 2, or 3 and my consultant has said this is because my condition is far more complicated than that. He is going to discuss this next time he sees me which i didn't think was for another year or so but his secretary seems to think it will be at the end of this year.
donna15310 k84461
Posted
k84461 donna15310
Posted
Thanks for reply Donna. I'm going to wait because i am no better or worse than the last time i saw him.
He did appear very concerned about me when the procedures didn't work, especially when the tests seemed to show no problem.
i'll keep you tuned....
donna15310 k84461
Posted
Make sure you keep the next appointment you get from the Consultant's office. Best wishes.
k84461 donna15310
Posted
Appointment has come through already and it is a soon as the end of September which is a surprise to me. Wonder if it's to arrange an endoscopy?
k84461 donna15310
Posted
Saw my consultant yesterday. Once again he said i do not have type 1, 2, or 3 as my achalasia is more complicated than that. He didn't elaborate and i forgot to get him to do so because he went muttering on about my notes on the computer. He's a bit awkward to communicate with to be honest. He did say that having achalasia at 12 years of age was very rare and that it is more commonly found in adults. He told me i have Osteopenia as a result of the age i was diagnosed and also down to losing so much weight at the time. He has prescribed me something to try to prevent it from developing into Oesteoporosis so i will go to the pharmacy tomorrow to get it.
He said i would of had achalasia before i actually had it and by that he meant that my body had been developing the illness over a period of time (maybe years). I asked him if he meant i was born with it and he didn't know. He said very little is known about the causes of the illness so it is difficult to give answers.
I go back to see him in a year's time and will have more tests in 2 years.
neil32387 k84461
Posted
You are in the right place for advice and I am sure much will follow re Medical Treatment options. However, in the interim it might make sense to mitigate the risks ( if you are not already) of acid damage as much as possible. Either from your stomach (if you get that) or from foods that linger. Obvious stuff like regular sips of antiacid and cutting back on acid foods (tomatoes pastes etc) and drink ( orange juice etc, fizzy drinks, and Acidic wines). I have not had surgery for A (at the mo) but my doc advised the above. Seems really obvious, but the penny did not drop until I was told- odd but...
Best of luck and wishing you healthy karma,
Neil
k84461 neil32387
Posted
Thank you very much for your message.
neil32387 k84461
Posted
I drink mainly water too. Trying to keep the ph balance as neutral as possible. I just noticed you are in the UK. I met with an Achslaia meet-up group last weekend in London which was very useful. The group has produced an excellent guide called a Patients Guide to Achalasia. If you google said doc but add OPA to the search you should find their guide and meeting details etc... Apologies if you have had this advice already! Its a long thread
Hope you have a peacful weekend and the sun makes an appearance!
Healthy karma,
N
k84461 neil32387
Posted
Fizzy drinks fill me up. I was told to drink milk shakes with ice cream in them which i have found very helfpul once a day.
I had googled support groups and saw the one in London but it is too far away for me to travel. I saw a list of support group but there were none within travelling distance at all.
That's interesting to know the group has produced a guide.
Thanks for replying again. We had sunshine all day yesterday but then had thunder and lightning!
Best wishes to you.
1blindmice k84461
Posted
Because of different terminalogy I might be wrong, but I had a pneumatic distallation. The idea is to get on the LES and Tear the muscles down. Anyhow as it was explained to ME it is a very safe procedure UNLESS there is a perforation which could happen. So when I had the procedure I was made aware that there was a surgeon on standby for that. Immediately after the procedure, (you don't feel completely awake). I was taking to radiology to drink barium and have them xray me to look for perforation, because if one is found then back to the o.r. for surgery to fix the perforation. So yes there is the risk of perforation, dying or spending time in the ICU, but the doctor I saw (richter in Tampa) had a lot of experience under his belt. The other problem with this procedure is the constant xray exposure. During the procedure the doctor is guided the entire time by an xray, So you are lite up for a good 5-10 minutes non stop and of course that can't be good. The relief I got wasn't the 2 years or longer I was hoping for, but the constant chest pains were immediately relieved and I could eat normal for a smal time.
The doctor told us that there was a 1% chance of a problem but if it happens to you then it's a 100% chance. (I guess trying to make humor). We did find another Gi doctor who was trained to do it but the hospital he was associated with did not do it. He too felt it was a fairly simple procedure with a lot of patients having a great response. Some people up to 5 years.
But as with all medical procedures, there is that risk.
Sorry that you are having problems.
k84461 1blindmice
Posted
That's another interesting message so thank you very much.